Sunday, September 19, 2010

Goin' Home!

So if all goes as planned, we should leave the hospital at UMDNJ in the morning. Overall our stay here has been good, the level of care was phenomenal! We have several wonderful doctors, nurses, and respiratory therapists to thank! So to list s few of them.... Drs. Navado, Kaur, Aguilar, and Euginia. . . Nurses, Elsa, Monica, Kate, Binda, Mariama, Violet, and many more...
And RT's, Luis, Richard, Diana, Mark, Ester, and Paul.

Thanks to everyone who send cards, emails and letters and to everyone who made us meals and shuttled Mary's food and our clothes.

Thanks most of all for all of the prayers, for that is what truly brought a quick recovery. We have lots of late nights of treatments ahead of us, so continue to pray for our strength and Mary's healing.

Friday, September 17, 2010

Mary Update and a Special Surprise!

Mary was successfully extubated at 11:00 am on Wednesday morning, she did very well during the extubation and was quickly put on room air via the ventilator (no supplemental O2). Since then, we have had a few rough nights, with Mary having a few mucus plugs in her upper airway and having desaturations down into the 60's (% O2). Again, this was a little scary for us, because it was very similar to what we were dealing with before Mary was hospitalized. The other problem we are now having is Mary not being able to maintain proper tidal volumes on the ventilator because of leakage, so basically the vent alarms every couple of minutes during the night. So none of us are getting much sleep. We were also moved to a smaller room in the PICU, which is the size of a sardine can, so we are always on top of each other.

On a positive note, we've received literally hundreds of cards and pictures from all over the world! We successfully filled all 3 windows in Mary's old room, and have since moved them all to the new room.

Mary also received a special gift from the Army Hockey Team (special thanks to Cadet Cody Ikkala). Mary got an autographed Army Hockey shirt and hockey stick along with the following video!

Mary thinks the video is awesome and shows it to everyone who comes into her room! I think she has watched it on her iPad over 100 times!

Thanks again for all of the prayers, letters, visits, food, and support!

Wednesday, September 15, 2010

Praying for a Safe Extubation!

So the conditions are finally set for Mary to be extubated. This will probably happen around 10:00 this morning. Please lift Mary up in prayer and pray that everything goes smoothly during the procedure. For SMA patients the first 4 hours after extubation are the most critical. Kate and I are very nervous about the whole thing so please pray for our strength as well.

On another note, the pictures from all over the US have started to pour in! Thanks to everyone for sending them so quickly! Mary has enjoyed looking at them and didn't
T want to hang them all on her window, because she was to hold her favorite ones close to her! Isn't that sweet?

We will continue to update.

Monday, September 13, 2010

Mary Receives 105th Airlift Wing's Young Champions Medal of Honor!

Yesterday, Mary had the special honor of receiving a Medal of Honor from the 105th Airlift Wing, Stewart ANGB for being a "Young Champion". The Young Champion Program was created in 1998 to recognize the courage of children who have battled or are currently battling life-threatening or debilitating injuries or illnesses. Although Mary could not attend the event in person, because she is in the hospital, Sue Manning, the person who nominated Mary for the award, accepted the award on her behalf and then delivered it to Mary in the hospital. Sue is pictured below giving Mary her award.

From Drop Box

Sunday, September 12, 2010

Mary has RSV and a challenge!!

I'm sure many of you have heard by now that Mary has been very sick for the past few weeks. Mary tested positive for Psuedomonos and we spent 5 days at Westchester hospital PICU last week, and went home last Sunday. Then Mary was still having lots of trouble so we went to see Dr. Bach ( on Wednesday. He admitted us to the ER at UMDNJ in Newark, NJ and by that time Mary's left lung was totally collapsed! Mary was quickly moved to the PICU where she was intubated. She later tested positive for RSV. Mary is still intubated and having some trouble with LOTS of THICK secretions. But we are working dilegently to keep her lungs clear. Now for the challenge!
Mary has 3 large windows in her room, we would like to completely fill them with pictures and cards from friends and relatives! Please mail them to:
The University Hospital
G PICU, Room 420A
Mary Nelson
150 Bergen St.
Newark, NJ 07103